Can anyone give me advice PLEASE :-)

[parisnicole]

Hi, unsure if i've posted in the right spot (im new here)
I haven't YET been diagnosed with anything in particular, but i'd like a little advice.
Since Jan of this year i've had constant diareah, stomach pains, bloating to the point I look 9 months pregnant, passing undigested food, nausea, no appetite you name it. I basically go to the toilet on average 20+ times a day :-(
I saw a specialist who wanted to do a colonoscopy, and said to me "by the sounds of it i'm betting its Chrons"..
Long story short my insurance didn't cover me for this to be done by him and I had to go to a different clinic to get it done.
My results went back to my doctor, saying everything looked fine, we took 5 biopsies BUT we didn't get to see the iliem, which from what i've read can be a part that is affected, but they reccomend a CT scan to check out that part.
My doctor is refusing to send me for the test, now saying that my problem must be mental and there isn't anything she can do :-/
I'd just like some advice, because i'm getting at the end of my rope and wondering if it could be something like chrons because they couldn't see that specific part in my colonoscopy.
Any help would be greatly appreciated
Also, if it helps at all im a 23 year old female and i've had every blood test there is to be done, and all that showed was an extremely high level of inflammation in my body, and stool tests came back only showing blood/mucous....
Thanks in advance And sorry for the long post.

 

[parisnicole]

Thanks for your reply Dexky
I was seeing a GI doctor, but because of insurance, I had to go to a different clinic to get the testing done, but he was the one that said about the inflammation being a bit indicator. Ive got my lovely mum on my back about seeing him again, and i'm pretty sure I will be organising an appointment with him.. i'm giving my doctor one more chance tomorrow, and if she lets me down again, i'll be giving her the flick

 

[parisnicole]

Thanks Joan
My doctor was lovely when she "thought" she knew what was wrong with me, and was ordering every test known to man, but now she has put me in the, what I call, too hard basket and EVERYTHING I bring up with her is now "mental".. that being a constant headache for 4 weeks and severe acne :-/ Now i've actually written it, I can see just how terrible she is. Definatly going to see the Gastro doctor, my referal is good for 12 months, and I only saw him in april, so I should be able to get back in to see him.
Thankyou for your advice

 

[DustyKat]

Hi Nicole and :welcome:

I'm so sorry to hear you are going through all this...

Yes! definitely go back to the Gastro doc and get him to to do the referrals for further testing. There should be no problem getting back to see him on that referral as nothing has changed. If there is a bit of a wait tell them what is going on with your GP and that she is refusing to send you for a CT, as recommended, following your colonscopy. Also give them the name of the place you had your colonoscopy and ask that they request a copy of the results and recommendations. Based on these the GI may do a referral for your CT before you go back to see him so he has those prior to your consultation.

Good luck hun!

Dusty. xxx

 

[David]

Welcome to the forum!

I echo the above who say ditch your GP. Blood in stool and many of your other symptoms are NOT mental. I get quite angry when I hear such crap.

We've now got an Undiagnosed Club for those of you who don't yet have a formal diagnosis. You may want to check it out

*hugs*

 

[parisnicole]

Thanks guys for the advice Got slotted in with a different doctor today and basically told him to give me a referal for a CT scan, which i'll be getting on wednesday, and will be having the results sent to GI doctor instead (after I give them a call of course).
The doctor though, laughed at me when I asked for something, anything to take to stop the cramps and lessen the amount of times I go to the toilet, he did give me something, but laughed about it the whole time :-/ Not happy at all with them, I won't be going back there again I don't think.
It's so hard finding a nice, compassionate doctor anymore!!
I'll also check out the undiagnosed club, you've all been mega nice to me, thankyou :-D

 

[Dexky]

Please update us after the scan! I hope more than anything you find a compassionate doctor!! No luck so far I see!!

 

[parisnicole]

Just a little update I had the test, had to drink ALOT of the barium drink, that wasn't pleasant, and got injected with the dye which was a weird feeling. Results aren't back yet, there taking a LONG time to get back, considering most are back within a day. But i've started loosing weight again, I need too, but not the way it's happening, and i've been passing a fair bit of blood (sorry if thats TMI) and have completely lost my appetite, yay :-/ ... So, if this is apparently all in my head, as the doctor has said, wow, my head does amazing things lol! Will post another update when I get the test results back. Just another question.. is a CT scan reliable in giving answers regarding inflammation? The doctors really haven't explained alot to me!

 

[archie]

Hi what a journey tell you doc to get her head out of her ass, you are not mental unless your doc makes you that way with frustration!!!. Yes a CT will show thickening of the bowel wall or anything else going on in your abdominal cavity. It can look directly at the terminal ileum and the extent of any damage. They might also send you for a small bowel series which involves drinking more rancid concoctions (you get used the these!!) and having a load of x-rays. Good luck with all the investigations and hope you get some answers soon.

 

[StarGirrrrl]

A CT is a good test, but like all things it is not 100%. There are a couple of CD sufferers on here who had every test under the sun come back normal, until they did a pill cam (capsule endoscopy) which finally found the problem.

Good luck!

 

[Jennjenn]

Hi welcome.

If you have thickening of the small intestine wall a lot of doctors would not recommend a pill cam as it can get stuck. Another test that is good to see what is going on that is a bit more descriptive to see more is a small bowel series with follow through. The regular CT with dye does illuminate everything for the doctors to see but I was told the small bowel series shows more.
If I were you also I would find another doctor. I would not want to consider going back to someone who does not suggest they will find out what is wrong. Your symptoms and blood work indicate something is happening that is not within the norm.

 

[allieinwonder]

Hello, and welcome!

It definetly sounds like it could be IBD. As David said, we have a wonderful undiagnosed club section here on the forum that you are welcome to come join! We support each other through all of the tests, trying to figure out what is going on.

I myself have been told the "its all in your head" before as well. Don't let that get to you! It seems like some doctors just don't understand how this set of diseases (IBD in general) is hard to diagnose, and it doesn't fit a checklist of symptoms. People with IBD can experience a range of symptoms, and everyone is different. Some get markers in their blood, some don't!

As for me, they think my crohn's is in a place of my small bowel that can only be reached by pill cam. This took months for my doctors to realize; they diagnosed me with "severe IBS" looking at my test results, but I went to them month after month, showing them mouth ulcers creating tunnels in my tongue, skin rashes, giant cracks on the corner of my mouth, and low vitamin B levels.

From the time I have spent on this forum reading other's stories, as well as experiencing it, I have seen that this disease takes a long time to diagnose, and patience is key!

I hope they see something in your CT scan!! And again, welcome to the forum!

 

[StarGirrrrl]

Hi welcome.

If you have thickening of the small intestine wall a lot of doctors would not recommend a pill cam as it can get stuck. Another test that is good to see what is going on that is a bit more descriptive to see more is a small bowel series with follow through. The regular CT with dye does illuminate everything for the doctors to see but I was told the small bowel series shows more.
If I were you also I would find another doctor. I would not want to consider going back to someone who does not suggest they will find out what is wrong. Your symptoms and blood work indicate something is happening that is not within the norm.

That is quite true. That's why alot of the time, a SBFT is done first, so if there isn't any narrowing or diagnosis, a Pill Cam can then be done safely.

There is also a test pill you can take before the test to make sure nothing will get stuck.

 

[parisnicole]

Thanks for everyone's replies
My CT scan came back clear, although when I was peaking at the screen it said they accidently came across something that was benign? .. but he didn't even metion that to me.
He said it's IBS and I need to get over it.
I told him that i'm in constant pain and im comparing it to the pain I had when I gave birth to my daughter.. he just said to get used to it :-/
I said im taking immodium, it's not doing anything, im taking buscopan, it's not doing anything and also Colese which they prescribed and it's not doing anything.
He told me to take upto 20 immodium a day... in my head im thinking no, that would be WAY more than the recommended dose, and I don't see the sense of putting medication into my body when it's not working at all.
Then he said to keep taking buscopan, and I said it's not working, he said oh well keep taking it.
He was so rude to me, I almost walked out of his office in tears. He told me off when I sighed when he said there was nothing in my test results, he said it's like I want something to be wrong with me. I said no, I just want to know what is wrong with me, because whats going on with me isn't normal.
I told him when I press down on my upper abdomen, it feels like something is pushing down really hard onto the right side of my lower abdomen. He didn't do an exam to check that, he just nodded.
Ugh, i'm not going back there, I just feel like giving up! My mum is telling me to eat more vegetables and fruit, but strange enough, when I do, it makes it worse.
Sorry for the rant, im just so so annoyed at this doctor!
The strange thing is, i've had a cold with a really bad cough, and i've been taking cough syrup that is dyhydrocodiene (unsure if i've spelled it right).. and i've noticed its taken the edge off everything. I'm sure it's because of the codiene in it, and im tempted to just keep taking it because it's making me feel a little better.
I don't know what my next step is, everyone is telling me to just accept that theres nothing wrong and get on with it.. but, it's damn hard when your on the toilet upto 20 times day and night and doubled over with stomach pain!
Thankyou all for listening

 

[Dexky]

Don't give in Nicole! That sweet little girl needs a mom, ok mum, who is not ill all the time. Are you in an area where you can easily access new doctors?

 

[JoleneZ]

Hey You need to go see a new doctor!! I had the same problem i went to 3 different doctors! one told me that is was hormones because i just had my son.. then a year later i was still ill so i went to another doctor and he told me it was stress and to excercise.. i was already underweight from going the bathroom 20 times aday! so i didnt think that i had the energy to exercise. then i went to the 3rd doctor he told me it was ibs gave me meds they didnt work then finally he ordered test and 2 years later i was dignosed with crohns... So dont give up find a new doctor!! because no that is not normal!! and ibs isnt that bad!! you will find that you are just going to get worse.. towards the end it took everything to just get out of bed in the morning.

 

[David]

I agree with the above folks. Find another doctor and get another opinion.

 

[allieinwonder]

I agree with everyone else..time for a new GI! A doctor should never treat you like that...and unfortunately a lot of undiagnosed of a digestive disease get treated this way...I still don't quite understand why. I also hate when a doctor goes "YAY your test results are all normal, no disease!"...I know they mean well, but when you are feeling this bad, and they are saying to take a pill and leave them alone, you want that test to prove something is wrong. Find a GI who will listen to your issues and concerns, and treats you with respect, no matter how many normal test results you have!

 

[scottmyster]

HI agree with all the folks above to see another doctor who is willing to listen and compassionate about your feelings and will take you seriously. There is something wrong with your body and it's showing signs of it. Hopefully you can see a good doctor or specialist and finally get a proper diagnosis so you can get the help you need. best wishes

scott

 

[Chris_]

A CT is a good test, but like all things it is not 100%. There are a couple of CD sufferers on here who had every test under the sun come back normal, until they did a pill cam (capsule endoscopy) which finally found the problem.

Good luck!

Thats true.I had similar symptoms and for 5 years, i had every test(some of them twice) and they all came back clear.Knowing that something is wrong with me i kept trying.I went to 5-6 different doctors and they all told me its IBS and that i should get use to it.They gave me antiacids and some painkillers which did nothing.Sounds familiar so far?Finally i did a pill cam and i got diagnosed with crowns(ulcers in small intestine).Now i am on medication for 6 months and i feel great.

First of all dont let anyone convince you thats it something wrong with you mentally.You know yourself better than anybody and you know when something is wrong.Dont give up.See another doctor.Do this test(pill cam) and every test until you get the answers you want.I really hope that you will get well soon!

 

[parisnicole]

Thanks for the replies! Definatly time for a new doctor, im going back to my old doctor at a clinic that is meant for younger people (I thought the cut off age was 23 but its 25), when I was seeing a doctor there she was FANTASTIC and went beyond her duties to help me out, so im organising an appointment to see her, im hoping she's still there!
Tomorrow I will be ringing the doctors I have been seeing and requesting every test result in a hard copy for me to pick up, they take way too long to transfer them over to other doctors, and then atleast when I have them I wont have to explain everything in detail all over again.
I won't be giving up, it's great to have clear test results EXCEPT when you don't know what's wrong with you!
I will keep you all updated with what my new doctor thinks!

 

[LauraJade]

That really sucks. Just so you know, I must've read a thousand times, IBS does NOT cause inflammation. If you have provable inflammation in the intestine, (stool samples or even blood work) it can't be IBS.

I've also had the "it's all in your head" thing, even my partner says it occasionally. If I eat something that my body wants to throw out, and I tell him I need to go to the toilet like 15 minutes after I've finished eating, he thinks it's all in my head. That'd be a pretty powerful head!!

Good luck with everything, I'm also still trying to get a diagnosis.